World Autism Awareness Day 2nd April

Spectrum of Misconception commissioned Dublin based artist Shauna Harrison to design a T-Shirt for World Autism Awareness Day on 2nd April 2020.

We gave her the message which we wanted to send on that day, its a bold message, loud and proud.

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We know that with the right support everyone can make steps forward and achieve and its is really important to me that people are aware of this.

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At Zach’s first school which was the local SLD establishment the Headteacher just didn’t seem to recognise that given the right tools everyone can achieve.

They had one approach, which they didn’t always implement but that’s another story.

For the pupils who didn’t respond to that approach there was no alternative, because they had autism no thought or consideration was given to their feelings, confidence and self esteem.

If they became angry or upset as a result of being a spectator rather than a participant, they were labelled as being disruptive, challenging and difficult.

The gradual wearing down process continued until the pupil exploded and then there was no going back!

I can still remember the Head Teachers expression when I told her that Zach was very intelligent, she looked astonished and then said that everyone thought their child was intelligent in her well practised and over used way.

My rationale for not contesting this statement was that I realised that there was absolutely no point in rationalising with someone who never thought she was wrong.

I had expended lots of energy trying to get the school to be more inclusive in the way they taught and communicated.

Imagine having to expend energy trying to persuade a Severe Learning Disability School to be inclusive.

Did the school learn from their mistakes?

No, they blamed the pupil, the parents and anyone other than themselves. They seemed to think they were doing us a favour by allowing our unteachable children to attend, they weren’t going to learn anything but they might get the occasional pat on the head.

Our T-Shirt message is to let the World know that they shouldn’t and mustn’t write people who have autism off.

It’s a dream I accept, that person centred planning will become just that, and there will be needs assessments rather than resource assessments.

That each unique person will be given support which is measured, adapted to meet their needs and has really positive outcomes.

Positive outcomes mean the person is happier, less anxious, and more willing to work with the support that has helped them achieve.

The long term benefits are massive for the person, their family, the system and the exchequer.

I hope that you would like to share our message on the 2nd April, the designs are wonderful and colourful. Great to wear anyday, not just the 2nd April!

Please follow the link to order your T-Shirt.

All your orders will be packed up and posted by Jack or Zach who have autism and complex needs because they can and they will.

http://www.spectrumofmisconception.com

 

 

Life, stranger than fiction.

It is certainly true that life can be stranger than fiction but our norm is what we live by and we often forget that others may regard it as a little bit crazy!

On Sunday Zach had a day at home with us. He likes the odd day doing what he fancies and being in charge, it doesn’t matter how hard we try to redress the power balance, we live by Zach’s rules.

The day starts with me being told to get up, usually pretty early.

I come downstairs and sit at the table, Zach doesn’t like me going into the sitting room and there is a ritual which has to be performed if I do.

The ritual involves me being sat on the sofa and all the cushions thrown on the floor, I am then pinched on the cheek a few times. Not the worst but not the best so I do try to avoid it where possible.

How does Zach know I am in the sitting room? Because some of the floor boards creak and he always hears them and is up out of bed like a shot….

I have a number of pyjama tops which Zach likes me to wear, all various shades of pink and he takes me to change my top about every 15 minutes. Its not easy being tired and grumpy in our house as it all needs to be done with a smile!

Due to the pressures of being micro managed and not allowed to move unless told to I usually nip out for a few hours just to try and hang on to the last crumbs of sanity I  have.

It goes like this, all three of us go out for a drive as requested by Zach, the route determined by Zach. When we get back to the house, John and Zach always have to go for another drive, a longer one which means I should have time to shower, dress, get my bike out and nip off to see my Dad.

I come into the house and charge up the stairs for my shower, wash the bits that count and quickly dry myself, I am up against the clock! Drag my clothes on my still damp body and take a quick peek out of the bedroom window and ……they are back!

They have only been gone about 10 minutes, I charge downstairs and go out of the backdoor, locking it behind me. I have shoes, clothes but my hair is wild underneath the hat I wear to avoid getting my hair pulled and no key, phone or bag.

 

I stand out of sight behind our shed and listen….they are coming into the house and not going for the usual walk!

Zach will usually go upstairs to relax and play music but I can hear him downstairs, listening to Mika. I can hear John upstairs as a window is open so I bide my time and clean my bike (which hasn’t been done in about 3 years) as I find it hard to be idle and just do nothing!

I keep peeking around the corner of the shed to see if I can see John to let him know I am there, I see Zach dancing around eating his breakfast, I dart back, fortunately he doesn’t see me.

My mind wanders back to when my Nursing Tutor told me he thought I should join up to one of the armed forces the Army, Navy or Royal Air Force. He thought that because I liked sport and it would be ideal for me. What he didn’t realise is that I didn’t want to live a life being told what to do by someone else….hold on…

So there I am, feeling like I am surveying the house, staking out while I clean my bike. I knew I wasn’t right for the Armed forces.

We have a woodshed which has slats just next to the shed and as it isn’t full I could squat down by it and peek through the slats to see into the kitchen. John usually spends time pottering about in the kitchen on a weekend morning, just not today it would seem.

After what felt like an eternity, I can’t hear Zach’s music anymore and I think he may have gone upstairs but I don’t want to blow my cover so stay hidden behind the woodshed. I peek through the slats and see John in the kitchen bending over to put washing in the machine.

He turns and he sees me, he looks a bit alarmed. I signal to ask if Zach is upstairs and he silently nods. He unlocks the back door and passes me out the bits I need and off I go.

Fortunately its a windy day so I can (possibly) excuse my hair to anyone I see.

th hair

I pedal off down the road feeling victorious!

I have a nice visit to my Dad, he talks to me about his days in the Royal Marines and I think he would have been proud of me this morning.

When I get home I know what will happen and am ready for it.

Zach will ask me what is happening tomorrow and I will tell him that Maggie and Paul are coming to get him in the morning and he will tell me to go to bed to make the morning come more quickly.

OIP pjs

I am back in my pyjamas which is what Zach requires and have to change my pj top a good few times before the day is out. I sometimes rebel a little and try to get downstairs but Zach comes to find me and sends me back to bed.

Around 5 O’clock Zach passes me my uniform for work, I start at 6 but am sure there is stuff I can do on the work intranet while I wait.

Work over, and I am prompted to get back into my pj’s and get into bed for the final time today.

With the exception of being stuck outside in limbo between going out and staying in, it was a normal day.

OIPTM6FHLMN fam photo

Life, stranger than fiction? I think so.

 

 

 

That was the year that was….

 

Pretty difficult to say the least!

I hope everybody reading this had a good 2019 and I wish you all a very Happy New Year.

There were high’s as well as low’s to 2019 for us,  which is at least a good thing.

Our Social Enterprise, Spectrum of Misconception did really well selling autism awareness Christmas cards.

The very lovely Malini Croxson who is an artist from Hertford did the illustrations for us, they were warm and beautiful images which conveyed a powerful message regarding autism as well as being Christmas in an image. Mal was wonderful to work with and we were thrilled with the end result.

We had the cards by late September so were ready with plenty of time to start selling, we had some of the cards which Laura Dixon did for us last year left so sold them too.

The cards flew and once again we are very grateful to everybody who ordered and sent a message with their card regarding autism.

Zach did brilliantly, he is involved with putting the orders together, making up the boxes, packaging the cards, and then taking them to the post office.

We used a small local post office in Sele Farm and the staff were very helpful and quickly got to know Zach.

Around the second week in December ‘Mind the Gap’ the shop and café at Hertford North Station started selling the cards for us. Zach’s support team often drop in there on their way to and from work so have good banter with the guys there. We were really grateful for this extra exposure and hope we can get them in there earlier next year.

We have sold 2500 cards this year which is brilliant in just our second year. Zach once again stepped up to the challenge and with the expert support from his team did everything that was asked of him.

An absolutely massive thank you to all who have supported us and continue to do so, you are the kindest and the best.

Zach really enjoyed taking around cards and a small gift to those places he visits regularly. One for his hairdresser, Bobbie at Cut Loose, the security guard at Tesco’s Hertford, the guys at Mind the Gap, and for staff at trampolining and golf that he goes to very regularly.

He then chose me a beautiful bunch of flowers from Tesco and came home with a beaming smile on his face as he thrust them into my hand. There was also a Christmas card (Spectrum of Misconception of course) signed by him, it was lovely.

So that was all great and to be honest a very welcome distraction from other things.

My beautiful Mother passed away in September, she fell in August 2018, went into hospital with a broken wrist and never walked again (She had walked half a mile the day before the fall).

The care at the hospital was pitiful and I just had to get her out of there so she went to a local nursing home that my Father could get to every day. Unfortunately they didn’t walk her either and despite regular physio and me and other family members attempting to get her moving she spent the vast majority of her days sitting in a wheelchair which was only made for occasional use.

I didn’t miss many days visiting in the year she was at the home. I worried for her welfare. Boring days spent sitting in a wheelchair wasn’t what she was used to, Mum loved being around people who were chatty and cheerful. Some were, but plenty weren’t.

I went to the residents meetings to ask about trips out, activities and so on. There was a shiny brand new mini bus parked outside but I think she went out twice. I couldn’t get her into the car anymore because she was panicking when mobilising being so used to the wheelchair

Dad visited almost every day, they would sometimes sit and hold hands and nod off to sleep just as they had at home.

While Mum was well and the weather was fine we would walk down the lane and chat about the birds and flowers. On a Friday I was her only visitor and we would do something like play a game, do a jigsaw or I would give her a manicure or other beauty treatment. Sometimes we would listen and sing to music, sometimes dance with me holding her hands and moving the wheelchair in time to the music.

I will always treasure all the time I had with my Mum, she was 95 and I feel so lucky to have had so much time with her in my life. Mum was always so appreciative and enjoyed and got joy from such simple things, her face would light up when she saw me arrive.

Mum stopped eating, she had been suffering terribly with gingivitis (bleeding and inflamed gums caused by bacteria in the mouth, caused by not having teeth cleaned!) I was doing thorough mouth care every time I went in,  a very good friend who is a Dentist had visited and told staff what they needed to do but it didn’t improve.

She was losing lots of weight and the GP told me that Mum was dying, which I sadly knew but it was still hard to hear. The GP told me this with Mum in the same room, I winched in pain for Mum being present to hear this. Hearing is the very last thing to go when somebody is very unwell and it was both unprofessional and clumsy of the GP to do this.

The next two days were the brightest Mum had been in weeks and I like to think it was a middle finger from her to the GP. We talked and laughed and enjoyed the Summer weather.

From there things went downhill though and I was spending most of every day by Mum’s side doing what I could to make sure she was comfortable.

It was a terrible struggle for me, as a nurse who has spoken up for so many patients over the years, making sure they had the care they deserved and were pain free to be having to do it for my own Mother.

My heart is incredibly heavy in the knowledge that the expertise of care that was needed was not given. Care Homes must not be afraid to use end of life medication to ensure comfort and peace for those in their care and their families. They must also ensure that carers are aware of the need for extra care to be given to palliative patients.

Mum passed away on the 26th of September, just over two weeks after her 95th Birthday. In the final week of her life I know, that Mum knew I was with her, she would still put an arm around my neck when I kissed her and also smile at me right up until the morning of the day she died.

I am finding that I am struggling more now than I did when she first died, the longer I go without being able to put my arms around her, the first Christmas, and now a year in which she has not lived but I am sure time will heal and I will find ways to keep busy and keep smiling as Mum would.

Elderly care, since I have been involved in some capacity, which is now 36 years (scarily) has never been what it should be. However I am increasingly upset and concerned when I visit patients who have had a stay in hospital and have not been got out of bed at all because there isn’t time. Short cuts are constantly being taken with some of the most vulnerable members of our society. It is, as it always has been the people who are least able to speak up for themselves but these people deserve respect and care just as the rest of us do.

They haven’t always been elderly, they have lived and worked, raised a family, travelled and some including my Mum been in a World War. They are people, someone’s Mother, Father, daughter or son.

The other big change is that after 11 years of volunteering with the charity Mudlarks I have for a number of reasons finished. I have enjoyed almost all my time doing things with and for the charity and the way it has grown over the time it has been running is amazing. I miss the team I worked with at the café and being part of that but will move onto pastures new, I am not sure which pastures yet but I am sure I will find something! I wish Mudlarks ongoing success, the café which I loved so much is moving to a new building shortly and will only improve I am sure.

So all that is left is for me to apologise for my sombre post, I hope I haven’t dampened your spirits too much. I know that my spirits will lift once I have my new goals and interests worked out.

In memory of my wonderful and incredible Mother, Peggy Margaret Bruton 1924-2019, never to be forgotten.

 

 

 

 

That was the year that was….

 

Pretty difficult to say the least!

I hope everybody reading this had a good 2019 and I wish you all a very Happy New Year.

There were high’s as well as low’s to 2019 for us,  which is at least a good thing.

Our Social Enterprise, Spectrum of Misconception did really well selling autism awareness Christmas cards.

The very lovely Malini Croxson who is an artist from Hertford did the illustrations for us, they were warm and beautiful images which conveyed a powerful message regarding autism as well as being Christmas in an image. Mal was wonderful to work with and we were thrilled with the end result.

We had the cards by late September so were ready with plenty of time to start selling, we had some of the cards which Laura Dixon did for us last year left so sold them too.

The cards flew and once again we are very grateful to everybody who ordered and sent a message with their card regarding autism.

Zach did brilliantly, he is involved with putting the orders together, making up the boxes, packaging the cards, and then taking them to the post office.

We used a small local post office in Sele Farm and the staff were very helpful and quickly got to know Zach.

Around the second week in December ‘Mind the Gap’ the shop and café at Hertford North Station started selling the cards for us. Zach’s support team often drop in there on their way to and from work so have good banter with the guys there. We were really grateful for this extra exposure and hope we can get them in there earlier next year.

We have sold 2500 cards this year which is brilliant in just our second year. Zach once again stepped up to the challenge and with the expert support from his team did everything that was asked of him.

An absolutely massive thank you to all who have supported us and continue to do so, you are the kindest and the best.

Zach really enjoyed taking around cards and a small gift to those places he visits regularly. One for his hairdresser, Bobbie at Cut Loose, the security guard at Tesco’s Hertford, the guys at Mind the Gap, and for staff at trampolining and golf that he goes to very regularly.

He then chose me a beautiful bunch of flowers from Tesco and came home with a beaming smile on his face as he thrust them into my hand. There was also a Christmas card (Spectrum of Misconception of course) signed by him, it was lovely.

So that was all great and to be honest a very welcome distraction from other things.

My beautiful Mother passed away in September, she fell in August 2018, went into hospital with a broken wrist and never walked again (She had walked half a mile the day before the fall).

The care at the hospital was pitiful and I just had to get her out of there so she went to a local nursing home that my Father could get to every day. Unfortunately they didn’t walk her either and despite regular physio and me and other family members attempting to get her moving she spent the vast majority of her days sitting in a wheelchair which was only made for occasional use.

I didn’t miss many days visiting in the year she was at the home. I worried for her welfare. Boring days spent sitting in a wheelchair wasn’t what she was used to, Mum loved being around people who were chatty and cheerful. Some were, but plenty weren’t.

I went to the residents meetings to ask about trips out, activities and so on. There was a shiny brand new mini bus parked outside but I think she went out twice. I couldn’t get her into the car anymore because she was panicking when mobilising being so used to the wheelchair

Dad visited almost every day, they would sometimes sit and hold hands and nod off to sleep just as they had at home.

While Mum was well and the weather was fine we would walk down the lane and chat about the birds and flowers. On a Friday I was her only visitor and we would do something like play a game, do a jigsaw or I would give her a manicure or other beauty treatment. Sometimes we would listen and sing to music, sometimes dance with me holding her hands and moving the wheelchair in time to the music.

I will always treasure all the time I had with my Mum, she was 95 and I feel so lucky to have had so much time with her in my life. Mum was always so appreciative and enjoyed and got joy from such simple things, her face would light up when she saw me arrive.

Mum stopped eating, she had been suffering terribly with gingivitis (bleeding and inflamed gums caused by bacteria in the mouth, caused by not having teeth cleaned!) I was doing thorough mouth care every time I went in,  a very good friend who is a Dentist had visited and told staff what they needed to do but it didn’t improve.

She was losing lots of weight and the GP told me that Mum was dying, which I sadly knew but it was still hard to hear. The GP told me this with Mum in the same room, I winched in pain for Mum being present to hear this. Hearing is the very last thing to go when somebody is very unwell and it was both unprofessional and clumsy of the GP to do this.

The next two days were the brightest Mum had been in weeks and I like to think it was a middle finger from her to the GP. We talked and laughed and enjoyed the Summer weather.

From there things went downhill though and I was spending most of every day by Mum’s side doing what I could to make sure she was comfortable.

It was a terrible struggle for me, as a nurse who has spoken up for so many patients over the years, making sure they had the care they deserved and were pain free to be having to do it for my own Mother.

My heart is incredibly heavy in the knowledge that the expertise of care that was needed was not given. Care Homes must not be afraid to use end of life medication to ensure comfort and peace for those in their care and their families. They must also ensure that carers are aware of the need for extra care to be given to palliative patients.

Mum passed away on the 26th of September, just over two weeks after her 95th Birthday. In the final week of her life I know, that Mum knew I was with her, she would still put an arm around my neck when I kissed her and also smile at me right up until the morning of the day she died.

I am finding that I am struggling more now than I did when she first died, the longer I go without being able to put my arms around her, the first Christmas, and now a year in which she has not lived but I am sure time will heal and I will find ways to keep busy and keep smiling as Mum would.

Elderly care, since I have been involved in some capacity, which is now 36 years (scarily) has never been what it should be. However I am increasingly upset and concerned when I visit patients who have had a stay in hospital and have not been got out of bed at all because there isn’t time. Short cuts are constantly being taken with some of the most vulnerable members of our society. It is, as it always has been the people who are least able to speak up for themselves but these people deserve respect and care just as the rest of us do.

They haven’t always been elderly, they have lived and worked, raised a family, travelled and some including my Mum been in a World War. They are people, someone’s Mother, Father, daughter or son.

The other big change is that after 11 years of volunteering with the charity Mudlarks I have for a number of reasons finished. I have enjoyed almost all my time doing things with and for the charity and the way it has grown over the time it has been running is amazing. I miss the team I worked with at the café and being part of that but will move onto pastures new, I am not sure which pastures yet but I am sure I will find something! I wish Mudlarks ongoing success, the café which I loved so much is moving to a new building shortly and will only improve I am sure.

So all that is left is for me to apologise for my sombre post, I hope I haven’t dampened your spirits too much. I know that my spirits will lift once I have my new goals and interests worked out.

In memory of my wonderful and incredible Mother, Peggy Margaret Bruton 1924-2019, never to be forgotten.

 

 

 

 

Spectrum of Misconception

Its that time of year again, time to share a very special message.

Spectrum of Misconception is our Social Enterprise, set up to give our son Zach the opportunity many of us take for granted, to experience work.

When we set up the enterprise we wanted to make it relevant to Zach and so we came up with an idea which as well as giving Zach work experience also educated people about autism.

Autism is extremely complicated and varies so much from person to person. How many times as a parent have I had someone tell me ‘oh yes, I know someone like that’?  I can tell you, it is many! Have I challenged everybody who has ever said it? No!

To explain the vast spectrum would be like unravelling a never ending ball of string because there are so many differences.

We wanted to bust some of the most commonly held myths about autism, to share messages which would raise awareness of autism, to let people know that not everybody who has autism comes from the same mould. The only thing most people with autism definitely have in common is the label.

Our Enterprise was entirely funded using Crowd Funding and the very generous support of dear friends. We feel a massive responsibility to make the enterprise a success and to keep it going, we hope that we can expand and offer more people who have autism and complex needs the chance to gain work experience.

How can you help?

You can order some of our wonderful Christmas Cards. The cards are unique. We asked a local artist Malini Croxon to illustrate them this year and she has really captured our concepts. Both illustrations carry subtle autism awareness messages related to the image and a festive greeting.

Zach’s role in the process is packing up orders and taking them to the post office where they are weighed and passed through to the staff behind the counter.

 

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This is a challenge for Zach but he is doing brilliantly at getting boxes ready, packing up the correct orders and in the Post Office. He is helped with all this by his wonderful support team.

We hope to receive your order, for us there is no more important message than to raise autism awareness and understanding.

Find us at http://www.spectrumofmisconception.com

 

 

And the weather looked so nice…

It’s a bright and sunny morning, blue skies and it should make me feel cheerful. We haven’t had too many of these lately.

Every morning Zach is collected by taxi, this has happened since he was 4 years old, that’s nearly 18 years ago now.

The taxi was originally needed because the schools weren’t within walking distance, when you have a child who has additional needs they don’t go to a local school, they go to the closest appropriate school which can be quite some distance.

We have had a variety of drivers and escorts. There is always an escort who is responsible for Zach’s welfare while he is in the taxi.

We have had some drivers and escorts who have totally got Zach, and plenty of others.

Because someone drives your son to and from school every day does not mean they understand autism or your son.

They see your child lashing out for what they think is no reason, what they don’t know is what happened before your non verbal child lashed out.

Imagine a day where everything seems wrong for somebody who the importance of everything being right is paramount.

The wrong breakfast, they weren’t the right porridge oats. They were smaller and a different colour. A different escort in the taxi, she didn’t know how to put the harness on and she smelt different. Your class supervisor wasn’t in the classroom today, she is always there and usually greets you with a big smile and high five, the person there today wasn’t smiling at all. There was nothing for lunch which you liked, your 1:1 tried to make you eat peas, don’t they know you don’t eat anything green. You had swimming in the afternoon and you got to the pool to find the pump was broken and you couldn’t go in, swimming is your favourite activity and you were really looking forward to it. It’s nearly home time and you are looking forward to getting home and just chilling out and pleasing yourself. Everyone else has left school and your taxi still hasn’t arrived. The taxi finally pulls into the school gates and it is a taxi driver who talks about you as though you are not there and when you are getting in to the taxi he speaks sharply to your 1:1 and you lash out, you have had a day of being told what to do, of changes which you don’t like or understand and this feels like the final straw. The only way you can let somebody know that your day has been terrible is your behaviour.

This is what having autism can be like. For the non verbal the inability to let somebody know you are struggling with all the changes to your day, that having food you don’t like put on a fork and held under your nose repulses you, the smell of the escort was really offensive to your nose, the different person in the class room upset you, you like smiley people and people who are warm and friendly, you love swimming, the pool was there, it had water in it, you just don’t understand why you were denied your favourite activity, you were hungry all morning after not eating your breakfast, being hungry  makes you feel grumpy, you wanted to go home and your taxi was late and then the driver raised his voice and you really don’t like people arguing or shouting.

This isn’t a real day but it easily could be and how some of the world perceive that lashing out.

We have all had days which don’t go well but we can usually talk about it through the day, understand why things are not as we hoped and express how it makes us feel.

This morning Zach’s escort who we all love and has a brilliant relationship with him was off work because she has had an operation. Obviously we all understand that she needs to recover but Zach doesn’t understand where she is.

Zach’s taxi driver recently changed, the driver we had for a long time has left. The current driver talks about Zach as though he isn’t there.

The car has changed, and the harness which is used is not the right one for this vehicle. The harness is made for a people carrier which is what Zach used to travel in to school. This makes it very difficult to do up the harness so usually the escort gets in the back with Zach and helps do it up.

I have tried talking to the driver about the harness being the wrong model for a car but he tells me that it isn’t. I have looked at the manufacturers website and it clearly states this harness must not be used in a car. I have let the Council know that Zach is being transported in a harness which is not only unsuitable but he would also be trapped in were the car to get shunted from behind.

This morning Zach became escalated while having the harness done up and the taxi driver told me Zach should be put into care.

It is hard to imagine feeling that you have the right to tell somebody else that their child should be put into care.

What does he think would happen if Zach was put into care? Does he think that because Zach was behind closed doors everything would be okay? That Zach would no longer feel anxious at change and all those things he can’t control?

The driver says he knows all about autism as he has driven a taxi for 15 years carrying young people to and from school.

It’s hard to know what to add to this post, I am pretty sure I don’t need to conclude with my feelings.

Autism never has a day off, the smallest changes can cause anxiety and panic. And I am really not keen on Zach’s current taxi driver.

 

 

Looking back, keep moving forward.

Saturday was miserable, rain, rain, and more rain. I decided to go into our loft and have a sort out, just the kind of job to be saved for a rainy day.

I found many things I had forgotten that we had, many of which should have been thrown away without actually ever making their way to the loft.

Anyway I started sorting, charity shop and bin.

I came across a file which was full of information about Zach going back to when he was first diagnosed with autism at 2 years 8 months.

I decided it was time to clear some of this stuff out, we just don’t need it anymore. I was looking through to make sure that I didn’t throw away anything which we may want to refer back to. What I read made memories come rushing back of some really difficult times, things which I knew were being done to my son and was powerless to stop.

Zach’s first school was a local Severe Learning Disability school. It was the choice! The only school available.

The nursery at this school was such a loving, nurturing environment, the staff were so professional and keen to help the children.

Things quickly changed when Zach left the nursery. We were investing a lot of money in PECS ‘Picture Exchange Communication System’ to help Zach to communicate. He was very quick to pick it up and extremely capable.

School didn’t seem to be using it with the exception of snack time, imagine if the only communication efforts you could make were to ask for food and drink. It is tokenistic at best.

Despite me working hard to have a good relationship with school I was frustrated that more was not being done.

Zach spent some time in the autism base where he seemed to be happy but when he left the base things very quickly went down hill at an amazingly fast speed.

We limped along, I looked at other schools, I wanted Zach to enjoy school and to learn, I didn’t feel that was happening. He would melt down almost every evening when he arrived home having been trying to hold it together all day.

I approached education about him moving school but was told the school were meeting his statemented needs, I didn’t feel they were.

I wished I hadn’t read some of this stuff on Saturday, the memories are some which I did not wish to revisit, but at the same time having watched the recent Panorama programme about the systemic abuse at Whorlton Hall in Durham it is so easy to see how those who have autism and complex needs end up being sectioned and sentenced to a life of frustration, anger and disappointment.

The document I found which hit me hardest was a report which was written following Zach coming home with marks and bruises on his torso, front and back and finger bruises on his inner arms. Zach was 10 years old then, he was a tiny boy at 10. The report made me feel heartbroken and intensely angry at the same time.

Zach’s crimes that day included trying to take instruments from a box in the music lesson, he was told to sit down, he did that for 30 minutes! That is a very long time for Zach and he then got up and returned to the instruments. After sitting for 30 minutes Zach deserved a massive reward, but no he was repeatedly told to sit down again and then someone held his school shirt to keep him on the chair. Staff seemed surprised that Zach’s reaction was that he began to aggress to staff. He had done what he was asked to do but that wasn’t enough, there was no positive reinforcement, no verbal praise just an expectation that he would continue to comply with no reward.

He was then restrained.

The day continued in a similar vein, reading it is hard, knowing that my boy was reaching out to staff at the school, trying to build relationships and all his efforts were rebuffed.

The day was full of sitting, assembly, music, then an achievement assembly. He was restrained again in achievement assembly after becoming unsettled. Allowed out into the playground where he wanted to take his school shirt off, he was repeatedly told he must wear his shirt, then allowed to take it off for 10 seconds and was then told to put it back on! All these mixed messages would confuse most people, imagine trying to comply when the message is so unclear.

He was then taken back into assembly and tried to take his shirt off again, was taken out again, then back in, then back out!

When the car crash of a day was at it’s end Zach was led to the transport by two staff who were restraining him.

At the end of the report it says that his mood had not been good all day….which was surely no surprise to anyone.

I still remember that day, he was happy to be home and went outside to the trampoline. It was a boiling hot day and he took his shirt off and I saw his little body marked and bruised and couldn’t quite believe what I was seeing.

We should have called the police, it should have gone straight to safe guarding but I phoned the school and was told by the Headteacher that Zach had, had a very difficult day….she was telling me.

The incident was heard at a County Council pre-safeguarding hearing. The Head Teacher was invited to explain, she apparently claimed all the injuries were inline with what you would expect when using that method of restraint. They accepted this despite it being totally inaccurate. Neither Zach or I were invited.

The next morning the transport arrived and I opened the door to take Zach down to it and he shot off as fast as he could, running up the road away from the school bus. I kept him at home, I just couldn’t bear to put him through another day at that school.

Zach did go back to school after this incident but not for long, we were fortunately near the end of term and in September the Head temporarily excluded him very shortly after his return, she eventually permanently excluded him, much to my relief.

I am probably a nightmare parent, I will fight for my son to receive the correct support, in the best environment possible. I will aim high for him to live a happy life where he is treated with respect and given the dignity we all deserve.

I knew that the way the school had excluded Zach was unlawful, I knew that they hadn’t been complying with his statement and I knew that they hadn’t followed correct procedures to try to help Zach within the school.

There were autism experts available to give the school guidance but the school would not reach out to those experts. The school was using Teaching Assistants as teachers, young people straight out of University. The school just didn’t understand autism and complex needs or that functional assessments and positive rewards are needed.

The school had a battle of wills going on with a 10 year old boy, they wanted to control Zach and he didn’t want them to. They took away his only method of communication, his PECS book because they said he was using it to gain control!

Can you imagine having your voice taken away as there was a danger you might ask for what you wanted?

Zach did not learn anything positive at that school, the wonderful work the Nursery team put in was quickly forgotten. What Zach learnt were great avoidance techniques, how to get out of doing something he didn’t want to do.

The school sent so many mixed messages it must have been hard to understand what it was that he was actually meant to be doing.

We appealed against the exclusion, which went before an independent panel. The panel found the exclusion unlawful, they found the school had failed Zach in many areas while he attended. We asked that he was not reinstated even if the extra support was put in place.

Since Zach’s exclusion in 2008 a number of other young people have been excluded from the same school, all have autism and complex needs. The school clearly learned nothing from failing Zach, all these young people deserved to be listened to, to be allowed to communicate and grow and learn.

I suppose I felt the need to write this post after watching the panorama programme as the behaviour of the staff at this school was inflammatory to Zach. The school totally and utterly refused to believe that they were in anyway implicated in the way in which Zach behaved.

I have kept these records, they are a reminder of why we fight with everything we have to make sure that Zach is continuing to learn, to live a good and happy life and allowed to express himself.

Positive Behaviour Support is teaching Zach better ways to communicate his likes and dislikes and to give him choice. Zach’s team fully recognise that he is intelligent and needs to continue to learn and acquire new skills as we all do, we just need to be given the right opportunities to allow that to happen.